I asked the Owl yesterday what his kitchen would be like when he grows up. What would be in his refrigerator, cupboards, etc. His answer was fries, ice cream cones, and oreos. Not bad! I asked him if he would be the one making the oreos (we have never found any store-bought sandwich cookies that are safe for him). He said he would make them and let me eat them! Then I asked him what he would serve for dinner if I came to visit. He got very thoughtful and then responded, "hmmm, maybe something like fries and Plentils, and chocolate ice cream cones for dessert." (Plentils are lentil chips.) He grinned thinking about the prospect of having me as a guest for dinner. I'm looking forward to it!
I had to use the Owl's epi pen a few days ago, for the first time. There were a couple of times in the past that I probably should have used it, but was too nervous and went to the ER instead. In light of all the news stories I seem to keep reading about kids who died because they didn't get epinephrine in time, I felt more confident about administering it this time around, and I am here to tell you, it is not hard at all.
The Owl was eating a favorite food that I believed to be safe, when he started to complain that it tasted bad. He gave some to me, and it tasted normal, so I questioned him a little more. He said his stomach was suddenly hurting, his neck was hurting, and his mouth was full of jelly. The combination of symptoms made me worried that it could progress quickly to something more serious, so I injected the epi pen into his thigh. It was exactly like using the trainer except for the fact that I had to keep my son from squirming away. He was screaming and mad at me, of course, but it was over quickly and we headed to the ER.
On the way to the ER, Herbie was crying hysterically that he didn't want his brother to die. While the Owl was just moaning and feeling sad about his shot, I was desperately trying to calm down Herbie. When we arrived, Herbie said he had terrible pain in his leg. He hopped on one leg through the parking lot, into the ER to the registration desk, to the triage nurse, and to the exam room where he collapsed in a chair. Wondering if I needed to have both my children examined, I questioned him about what exactly was hurting. He pointed to a spot on the outer thigh of his right leg where he said it hurt. The exact spot where I had injected the epinephrine on his brother. The pain seemed to subside when the doctor came in and evaluated the Owl, who got more medication, and by the time we left, he was fine.
The only way that I can think to explain it is an extreme case of empathy. His intense love for his brother gave him more intense empathy than I have ever experienced. Heartbreaking. Heartwarming. Amazing.
There is something therapeutic about cooking, at least for me. Perhaps because I love eating a little too much, and chocolate a lot too much. And also because it is so rewarding to make something that the Owl can eat, and does eat, and actually asks for more. So while I have a post sitting in my drafts folder about things I never thought I would be up against as a parent, I'm not sure about publishing it yet. I turn to chocolate and desserts instead.
For coffee hour at church several weeks ago, someone brought in a pan of those peanut butter rice crispy treats with chocolate frosting on top. I have noticed that kind of bar is really popular here in Minnesota, there are a lot of versions of them. The recipes vary, but they are full of gluten-containing cereal, of course peanut butter, and often butter, likely soy in the chocolate (since soy is in everything!), and clearly off-limits for my youngest son. He doesn't usually ask to eat anything at coffee hour, we always have safe snacks for him. But for whatever reason, he was really drawn to those bars and asked me to make a safe version for him. So we've been doing some experimenting at home--a dangerous thing because when we make a whole pan of bars that taste good but don't hold together, what is a person supposed do besides eat them? And then after finally making the perfect pan of bars, it is hard to resist eating even more. Now that I have the recipe mastered, we are planning to make more to share at church! If you haven't discovered No Nuts Golden Peabutter, I highly recommend it! If you are avoiding gluten, be careful not to buy the regular Rice Krispies, look for the gluten-free version that is often in the natural foods aisle. Or you could use Erewhon or another GF brand.
Peabutter & Chocolate Rice Krispy Treats
¾ cup sugar
1 cup agave nectar
1 ½ cups No Nuts Golden Peabutter
6 cups gluten-free Rice Krispies
10 oz. package Enjoy Life chocolate chips
¼ cup NoNuts Golden Peabutter
Heat sugar and agave in a saucepan over medium heat, stirring with a silicone spatula until sugar is fully dissolved. Add peabutter and stir until creamy. Remove from heat and mix in cereal. Press into a 9x13 pan greased with Spectrum palm shortening.
Add chocolate chips and additional peabutter to saucepan. Heat over low heat, stirring until mixture is a smooth liquid. Pour over the top of the bars in the pan and spread evenly.
Cool & eat!
I was trying to think of something cheerful to blog about that didn't include any deep thinking. So what better than chocolate! One of my favorite things. This time of year brings so many goodies. If I'm going to over-eat, I might as well enjoy it. And it might as well be safe for my youngest son to be around me when I have sticky fingers. So I'll share my fudge recipe, super easy and very chocolately. It is allergy safe for all the top 8 allergens, plus our random list of other allergens.
3 ¾ c confectioners sugar, sifted
½ c unsweetened cocoa powder
Dash of cinnamon
¼ c coconut oil
¼ c coconut butter
¼ c So Delicious coconut milk
1 T vanilla extract
Grease an 8x8 pan.
Whisk together powdered sugar, cocoa and cinnamon.
Heat non-dairy milk, coconut oil, and coconut butter over low heat, stirring with a silicone spatula. Turn off heat, add vanilla. Pour in sugar mixture and blend well.
Pour into pan and allow to set in refrigerator for about an hour.
I hear too much about the hygiene hypothesis and allergies. It is not my favorite theory, at least as the media puts it out there. It makes it sound as if my kid has allergies because I keep my house too clean. Although I am hyper-vigilant about hand washing around the Owl, that came after the allergies were diagnosed.
One allergist explained to me that it wasn't how clean my house was, but the fact that kids were not growing up on farms and in rural areas where they would be exposed to all kinds of things we don't have in our suburban home. So that made me feel slightly better. But when I read about studies saying higher-income families have more allergies than lower-income families, and the conclusion drawn is that the hygiene hypothesis must be true, I get irritated. Are they saying that lower income means poor hygiene? So people with less money don't know how to bathe or clean? (I grew up without much money, and my mom made us all clean the house, we even dusted weekly, so the house was pretty darn clean. In contrast, I have a good income now and my house is a pit...)
I wish people would ask questions about whether it may have something to do with the lack of access to good quality health care that lower-income children are not diagnosed with allergies. Maybe they are suffering and feeling sick and don't know why. Or how about talking about the rise in allergies and the changes in our food supply? There were no soy additives in the food I ate as a child. The food that my parents grew up with definitely did not have long lists of ingredients with unpronounceable chemical names.
I've heard similar hygiene theories floated around about autism. Of course there are a million things that are "studied" such as medication, parental age, income, and a long list of other "factors." I always want to scream that correlation is not the same thing as causation. And again, I wonder if the higher income and higher autism rates are related to health care access. People who wait to have kids may have higher income and better insurance. Why are these questions not being studied instead of saying that poor people are messy? It leads us down such desperate paths as infecting children with parasites.
Researchers need to be asking parents what should really be studied. We know, we just don't have time or enough sleep to work on these things right now. So now to decide...should I go clean up my kitchen now while the kids are asleep, or will it do them some good for me to leave the mess....
Every year I wonder who came up with all these Halloween traditions and why do we have to follow them? But every year we go through with the costumes and trick-or-treating and are rewarded with the joy of huge smiles and laughter from our kids.
This year, I volunteered at both of the boys' classroom parties. The amount of energy in those rooms is amazing, I was exhausted! The Owl was so giddy about wearing his costume, but Herbie, as usual, did not want to put his on, even though he had been excited for weeks leading up to the day and I had made sure to create something sensory friendly so it would not be unpleasant to wear. I coaxed him into it, and it was fun to see his transformation from feeling nervous and awkward to beaming with pride; every time a kid exclaimed that he had a cool costume, a little smile came over his face, getting bigger and bigger as more and more kids commented. I was particularly pleased that this year, both classes had candy-free parties, and none of the kids even seemed to miss the candy. They all know there will be plenty of candy to come from trick-or treating, so who needs it at school!
They loved trick-or-treating, which is funny to me, since the Owl can't eat any of the candy and Herbie doesn't really like it. I guess it is just exciting to be given candy! Getting the Owl in and out of his wagon at every house was good exercise for me (justifying me eating some of that candy they didn't want anyway). It was irritating, though, to hear the number of people exclaim, "what did you say?" to the Owl when he said, "trick or treat!" Seriously, when a child in costume rings your doorbell on Halloween night, what else do you expect him to say?!?!?!? I know he gets frustrated when people don't understand him, but he really wanted to say "trick or treat" at every house. So he persisted, and the fun of the whole day kept him in a good mood despite people's stupidity.
We got home, dumped out the loot, from which I took a few favorite things and promptly gave the rest to the lucky group of kids who rang the doorbell at that moment. My boys raided the pantry for their favorite candy--Wintergreen Lifesavers--and I gave them each some Nana's No Gluten Ginger cookies, way better than any of that cheap candy anyway! And they went to bed happy and exhausted, counting down the days until they can do it all again.
One of my favorite foods is pancakes. So I was happy to discover that it is also Nate the Great's favorite food, as the Wise Old Owl and I were reading the first book in the series. As the Owl flipped through the last pages of the book, he discovered a pancake recipe and got excited. It was a standard recipe, calling for such things as all-purpose flour, eggs, milk, and butter, which of course we never use. He wanted to know if we could make the recipe with sorghum flour. Then he scanned through the ingredients to see what else was in them. Sugar, baking powder, salt, all OK. He was sad to see it contained an egg, then remembered he could use an egg replacer. Milk was easy, he requested rice milk. He was stuck on the butter, but I suggested coconut oil and he cheerfully agreed. He really wanted Nate-the-Great pancakes for dinner. Rather than explaining to him why it might not work to drop in substitutes for so many ingredients and how gluten-free recipes need a mix of flours and things like xanthan gum, we just went ahead and made them they way he requested. (I added a scoop of ground chia seeds when he wasn't looking because, well I need to get protein into him somehow!) The first few pancakes were pretty flat, almost like crepes, but he gobbled them up. I added a pinch of baking soda and a splash of apple cider vinegar on the fly to puff them up. Then the rest of the pancakes got nice and bubbly and rose up like normal pancakes. And do you know what? They looked and tasted like regular old pancakes, the ones my dad made on Saturday mornings with all-purpose flour and milk and eggs and butter. The Owl dipped them in maple syrup (a new thing for him!) because Nate the Great likes maple syrup. So not that we were lacking options for pancakes, since I make them at least once a week and we have about a dozen different yummy recipes, but it was a fun little activity for us. I hope I can find a Nate the Great book where he says he likes meat or vegetables....
It's that time of year when all the neighbor kids are going to summer camp, whether it is overnight or day camp or just the daily activities through our community ed program. I'm pretty sure my kids would not do well at any of those places, and they don't want to go anyway, so that's OK. I have looked at local options for day camps for kids with autism. But the high cost combined with the fact that my kids are pretty nervous about new places if I don't stay with them, made me rule those out. So we are left with VBS (vacation Bible school) at our church, and ESY (extended school year) through our district.
Our church recently held its VBS program, and my kids loved it. It was a small group of kids, in a familiar environment with lots of love. The junior high and high school kids did a great job helping out with the little ones, ALL of the snacks were allergen free, and when they made t-shirts, they even had a special spandex one for Herbie to decorate instead of the regular t-shirts. Wow! There were certainly some rocky moments during transitions and new activities, but we left every session in a great mood and looking forward to the next. What a blessing! The theme was "Shine God's Light" and I have to say that the teachers and older kids helping really did just that for my kids. Hopefully that lesson transferred to them, inspiring them to shine God's light in their own way.
Last week was the start of ESY. Both of my kids were a bit apprehensive about what it would be like. The Owl's ESY is at the same preschool facility where he went last year, with mostly the same group of special ed instructors. The big change was that he would be taking the bus. He has been asking to take the bus all year, but because of his allergies, I preferred to drive him. After talking with the bus company extensively, I felt like we could give it a try. So the first day came, and he suddenly realized he was actually going to take the bus, and he changed his mind. After all the phone calls and arrangements I had made for busing, I felt like we should at least try it once, so I coaxed him into getting on the bus. As soon as he was buckled in, he was grinning about his new adventure, and it went swimmingly! He kept his allergy alert bracelet on, sat in sight of the driver, and the driver had easy access to his medicine. After he came home, all he could talk about was the bus. Apparently he had fun at school, too, and the teacher called me to go over a few things, but the highlight was definitely the bus. Now he is excited for every bus ride, I wonder if I will have to let him ride it in the fall, too.
Herbie was a little nervous, but not hysterical like last year. He remembered that it was fun, but it had been a year, so if it were up to him, he would just stay home. It was a little different from last year, meeting at the high school first to have breakfast then walking (across an athletic field) to the nearby primary school for the rest of the morning (not his regular school, but the one in the district with air conditioning). He stayed 4 hours instead of 2 like last year. Apparently he loves it, because he got off the bus grinning and leaping across the yard to tell me how fun it was.
I know how hard it is to go somewhere that you don't know what exactly is going to happen. I have trouble with that myself. But these kids are so little, and they are getting on their buses and going off to the (sort-of) unknown, then coming home with huge smiles. I know it is hard for them to go off by themselves and work on difficult things (speech, social skills, behaviors--tough stuff for them), but they go knowing that the staff is going to take good care of them. Everyone from the bus drivers to the paras to the teachers makes them feel loved, so they can bravely go to school and come home super excited about going back. Hooray for the awesome special ed staff in our district! Supported by people who truly value and care for them (and have a lot of fantastic training!), my kids were able to overcome their fears and make huge strides.
I have been hearing a lot of "it's not fair" lately, exclusively from Herbie. It is usually regarding something to do with who has to take a shower first or who gets the first bedtime snuggle or the perception that his brother got more iPad time. I used to always try to make things like that relatively equal, keeping better track of whose turn it was to do certain desired or undesired activities first.
Now I am trying a different approach. The jury is still out on whether it is going to work, but keeping track of who got to go down the slide first when we were at the park three days ago is just not at the top of my list of things on which I want to spend my energy. When I hear Herbie protest the fairness of something, I ask him if he really wants his brother's life. Does he really want to be like his brother, without the ability to climb up on the monkey bars or jump high on the trampoline or to eat cake from a bakery? He gets that and the protest stops. But of course there is always another protest the next day. If I'm handing out tortilla chips and he thinks the Owl has one more than he does, I ask if he wants to always eat the same things as his brother, should I toss the goldfish crackers and never buy them again? I tell him that being "fair" does not necessarily mean making things exactly the same, but doing the right thing for each of my children. I wonder if I'm being a little unrealistic saying these things to a 6-year-old. And one who has had plenty of unfair things in his own life.
Meanwhile, the Owl has never once uttered the phrase "it's not fair." (I hope I am not jinxing myself here!) In fact, he is the one who goes shopping with me and wants to buy frozen pizza (that he can't eat) for his dad, freezer waffles (that he can't eat) for his brother, dark chocolate bars (that he can't eat) for me, and all kinds of treats for his family that he knows we enjoy. We get home and he announces the gifts that he has selected for everyone. (Never mind that it is my money that he is spending....) He is so excited to see the smile on his dad's face when he announces what he picked out for him. And if we are driving past an ice cream place, he'll quickly point it out to his brother and cheer because he knows how much his brother loves ice cream. He is truly happy when other people enjoy eating things that he will never get to have. I hope that his positive and generous attitude lasts forever!
I want both of my boys to appreciate all of the good things in their lives and to realize that the good outweighs the bad. Herbie gets to enjoy all kinds of fun activities and delicious foods, and when anyone talks to him about these things, he excitedly says that he is lucky. The Owl only eats from a very short list of food, but he jumps for joy when we prepare any of them. He gets home-made versions of lots of treats and is going to be an amazing cook when he grows up. I want them to remember their blessings and their loving friends and family when the worries of life get more complicated than oreos or turns at the playground.
When my youngest was first diagnosed with allergies, I went through my cabinets and was astounded by the fact that almost everything in a package contained some sort of soy additive. I cleaned out the pantry and went shopping at the health foods store, looking for foods with shorter ingredient lists and no allergens. Guess what, there aren't many foods that fall into that category. "Organic" and "Natural" foods have ingredient lists that are just as long. Snacks and baking ingredients have a lot of allergen warnings. As a result, I find the few brands that work, and stay very loyal, and make a lot of homemade foods.
Not too long ago, I was shopping with the Wise Old Owl and came across a new product in the refrigerated section--flax milk. I read and re-read that label for 5 minutes, in disbelief that we had found a safe new product. It contained canola lecithin, not the egg lecithin or soy lecithin or sunflower lecithin that seems to be in 99% of packaged foods on the shelf. While I am irritated that almost everything seems to need lecithin, I was excited that this flax milk actually used a safe variety. I bought it and spent quite a lot of energy convincing the Owl to drink it, and I drank a lot of it myself since it is so tasty. Well, about 6 weeks ago, my son refused to drink it anymore. I felt frustrated that this new food had not lasted long in his diet and I kept buying it and trying to convince him to drink it. Today, I just happened to look at the label, and guess what is in it--sunflower lecithin!! When did that happen? Must have been recently because the company's website does not yet list that ingredient, but the package clearly does. I went on a mission and started reading all kinds of packages to verify nothing else had changed. Turns out that our hemp milk had been updated, too. One box was OK but a newer box did have sunflower lecithin.
Seriously, why do you need lecithin? I'm paying a premium for a "natural" product--organic and without chemical additives. Why are all of these derivatives of foods needed??? I'd guess that 95% of Enjoy Life products have sunflower in them. I heard recently about a new cookie line being launched and everyone is raving about it, of course they have sunflower lecithin in them. Let's get creative people! I am starting to think that sunflower is harder to avoid than soy!
I am not opposed to the existence of sunflower in foods, but I just wish there was a little more variety. The food industry seems to be stuck on a short list of common ingredients that are added to everything. Cheap oils, lecithin as a flow agent, soy flavor enhancers. How about real food, not modified food?? That is my dream...
On a related note, I noticed that the California Baby Super Sensitive shampoo & body wash formula changed awhile back. While still safe for my son, it now contains hydrolyzed quinoa protein. Really? How is that natural? Anything that says "hydrolyzed" should not be in a product labelled "natural." I might as well just buy the Aquaphor baby wash at less than half the price!